Transitioning to telegenetics in the COVID‐19 era: Patient satisfaction with remote genetic counseling in adult neurology

Abstract

The COVID‐19 pandemic rapidly changed genetic counseling services across the United States. At the University of Pennsylvania (UPenn), a large academic hospital in an urban setting, nearly all genetic counseling (GC) visits for adult–onset disorders within the Department of Neurology were conducted via secure videoconferencing (telegenetics) or telephone between March and December 2020. Although telemedicine services have been steadily emerging, many clinical programs, including the neurogenetics program at UPenn, had not built infrastructure or widely utilized these services prior to the pandemic. Thus, little is known about patient attitudes toward receiving clinical GC services remotely. From May 18 to October 18, 2020, all individuals seen remotely for GC in adult neurology via telephone or telegenetics were surveyed about their satisfaction with telehealth GC (N = 142), with a response rate of 42% (N = 60/142). Telephone and telegenetics services were referred to as ‘telehealth’ in the surveys to capture patient perspectives on all remote GC services, though the majority (N = 49/60) of these visits were completed via telegenetics. Surveys included the modified telehealth usability questionnaire (MTUQ), genetic counseling satisfaction scale (GCSS), and novel questions about future telehealth use. Preliminary results suggest that patients were satisfied with receiving remote GC services in adult neurology, with most participants strongly agreeing to all items about satisfaction with telehealth. Just 2% of participants preferred only in‐person visits in the future, but every participant was willing to consider using telehealth for future visits if their genetic counselor felt it was appropriate. Most participants preferred a hybrid model (73%), and some (25%) preferred only telehealth for future visits. Additionally, we found no differences in satisfaction with remote services based on visit type (initial vs. results disclosure) nor age. We conclude that remote GC is an acceptable method for the provision of services in adult neurology that is well‐received by patients.

Conducting clinical genomics research during the COVID‐19 pandemic: Lessons learned from the CSER consortium experience

“…These experiences mirror the transition to telehealth genetic counseling more generally during the pandemic (Mills et al, 2021) and align with prior work showing that telehealth genetic counseling increases efficiencies but may also be difficult for some patients to access (Danylchuk et al, 2021;Gorrie et al, 2021). For example, in one survey study, patients reported that virtual genetic counseling visits were generally satisfactory, but a majority of those surveyed still preferred a hybrid telehealth/inperson approach moving forward (Dratch et al, 2021) procedures was one approach that many projects identified as helpful.…”

“…These experiences mirror the transition to telehealth genetic counseling more generally during the COVID pandemic (Mills et al, 2021 ) and align with prior work showing that telehealth genetic counseling increases efficiencies but may also be difficult for some patients to access (Danylchuk et al, 2021 ; Gorrie et al, 2021 ). For example, in one survey study, patients reported that virtual genetic counseling visits were generally satisfactory, but a majority of those surveyed still preferred a hybrid telehealth/in‐person approach moving forward (Dratch et al, 2021 ). The experiences of CSER, considered alongside the broader genetic counseling literature, suggest that teleresearch procedures can be valuable tools to facilitate access to clinical genomics research and minimize disruption in case of emergencies that prevent participants from accessing clinical sites in person, research team members from working in an office setting, or both.…”

Germline Variant Spectrum Among African American Men Undergoing Prostate Cancer Germline Testing: Need for Equity in Genetic Testing

“…25 This testing involves evaluation of a blood specimen and therefore requires infrastructure support to coordinate blood collection, which may be challenging in the COVID-19 pandemic and postpandemic era since much of genetic evaluation has shifted to virtual visits with remote saliva sample collection for GT. 26,27 Mobile phlebotomy and other types of care processes will likely need to be considered more diligently in diverse populations when addressing implementation of RNA testing. 27 In addition, expanded panel testing may be needed to systematically test a larger set of genes among AA men to identify and characterize variants in genes of high or moderate penetrance given that multiple studies have now shown that AA men have a narrow spectrum of germline variants from standard multigene panels.…”

Telehealth in genetic counselling consultations: the impact of COVID-19 in a Portuguese genetic healthcare service

“…However, with the expansion of teleconsultation services, travel distance ceased to exist, and the cost and time spent travelling decreased. Consequently, patients faced fewer barriers to having the most appropriate and comfortable GC (Cohen et al 2019 ; Dratch et al 2021 ).…”

“…The use of the telephone model offers additional schedule flexibility, reduces geographical barriers, and sometimes is more convenient for the patients. Studies show that patients are very receptive to the telephone model since it offers greater convenience and access to specialised services and multidisciplinary care, minimises economic cost and time related to the consultations, and promotes a feeling of greater perceived personal control (Cohen et al 2016 ; Dratch et al 2021 ). Indeed, questions regarding the use of teleconsultations, patient comfort, time management, and understanding of what was discussed had a high percentage of agreement, showing great acceptance of this model even though most patients had already had a first face-to-face consultation before the pandemic.…”